Mrs Grace Edwards1, Mr Matthew Halpin1
1Sydney Local Health District, Australia
Biography:
Grace Edwards is the End-of-Life Care Coordinator at SLHD, with extensive experience in acute care, clinical education, and service development. She leads initiatives to improve compassionate, culturally responsive care, advance care planning, and consumer engagement. Grace is currently involved in research on Kennedy Terminal Ulcers, Not-for-Resuscitation policy reviews, and evaluating the quality of end-of-life care in acute settings. She has presented on calciphylaxis, JMO ACP education initiatives and quality end of life care in the acute care setting. Grace is passionate about improving death literacy across consumers and clinicians, building workforce capability and embedding public health approaches into palliative care.
Abstract:
Background:
Despite death being a universal human experience, it remains a taboo topic in many communities causing widespread discomfort and avoidance of conversations about dying. This lack of awareness can lead to missed opportunities for ACP, reduced autonomy in decision-making, and increased distress for patients and families. Cultural norms, fear, and societal silence around death perpetuate stigma, making it difficult for individuals to engage in meaningful discussions about their values, preferences, and care needs at the end of life. Improving death literacy is essential to fostering compassionate, person-centered care and empowering communities to approach dying with openness and dignity.
Aims:
To engage with local councils and community groups to promote ACP, awareness of end-of-life options and encourage community members to discuss their wishes and values with loved ones. To normalize conversations around death and dying increasing death literacy amongst consumers.
Methods:
The local health district collaborated with numerous local councils to run several events to address advance care planning, funeral planning, wills, caring for carers, death cafes and interactive panel discussions with local palliative and end of life care healthcare professionals.
Results:
Partnering with local councils led to improved engagement with consumers and communities. Feedback for the events was positive providing clear guidance that establishing ongoing regular consumer events plays an integral role in improving death literacy, reducing the stigma and encouraging compassionate communities.
Conclusions:
Health Services are uniquely positioned to lead community engagement in death and dying conversations. Partnerships with local councils, community groups and consumer voices can extend the reach of palliative and end-of-life care education, reduce stigma and promote informed decision-making. By engaging with consumers, we can better assess the needs of the community, ensuring that the care provided is person-centered, culturally appropriate, and aligned with the values and preferences of those at the end of life.